Posted on behalf of NHF Intern & Victory for Women Community Member: Dejah...
Reaching the Gold Standard
The focus was research at the Thursday afternoon session, Making Progress: New Initiatives for Women.
Dr Andra James, OB/GYN at Duke University had the initial idea for a foundation specifically geared to women: the Foundation for Women & Girls with Blood Disorders (FWGBD). She saw the need for all women and girls with bleeding disorders to be correctly diagnosed, and optimally treated and managed at every life stage. An alarming statistic, noted by Ann-Marie Nazzaro, PhD, showed that in OB/GYN residency programs, the resident MDs only received nine hours of menorrhagia training in their intern year. Further, those hours only increased to 11 during their 2nd/3rd and 4th years of residency. As a result, many women go undiagnosed for years, until they can find a physician—be it PCP, GYN or hematologist—to listen to them.
The most commonly-diagnosed bleeding disorder is type 1 von Willebrand disease (VWD), affecting 1 in 5 women with heavy menstrual bleeding. Females with bleeding disorders can log on to www.fwgbd.org where they can find a directory of all treatment centers. The site also notes if there is a designated female clinic or whether you will be seen in the regular HTC clinic setting.
Robert Sidonio, MD, MSc, is a hematologist at Children’s Healthcare of Atlanta. He will be launching a project within the next month in the Emergency Department that focuses on heavy menstrual bleeding, geared toward those female patients with no known history of a bleeding disorder in their family. Patients will be given a pictorial bleeding assessment chart to document their pad and tampon usage. If positive, Premarin is prescribed to control the bleeding. It is expected that bleeding will be under control within 24 hours. Patients will then be referred to a GYN for follow-up, and then on to the HTC.
NHF’s Victory for Women website has been undergoing many changes over the past year. The NEW site was unveiled at this year’s meeting. It offers resources, workshops and a webinar series for chapters and HTCs. It will also offer expanded opportunities to engage in community sharing: share your talents, “ask the expert” section, podcasts and sharing your story. NHF moderates all content before it goes live. Check out the new site and see what NHF has to offer you at www.victoryforwomen.org.
In closing, the ultimate gold standard for females with bleeding disorders is that all OB/GYN and hematologists will work together to obtain the best possible care through diagnosis and treatment for their female patients with bleeding disorders.
Note: This article was originally published in NHF Daily and was written by Pam Williams.